Hi my daughter has extremely dry skin on the palms of her hands and the soles of her feet she's prescribed a cream called cetraban that she uses she even has to carry it around with her because her hands dry up so quickly and they hurt  people Thinkby the looks of her skin she has excema or psarisis buy no it's that horrible mf is I hope my daughter goes into temisdion

Hi.

I just found this thread after doing a bit of research about very sore tonsils and throat for people with potential immune system problems.

I can't say I know a huge amount about MF, except for my own experiences. I was diagnosed about 14 years ago and have had 2 courses of light therapy and occasional checkups at dermatology (depending on how behind the NHS are with waiting lists etc...) 

Until now I'd characterise it as an inconvenience. Hearing the C word was undoubtedly a shock at the time, but I've come to appreciate that if you're going to get cancer, inconvenience is a good outcome.

Of course I'm always more worried about rashes and ailments, and try to use my free flu jab entitlement annually, but mostly it's just eczema/psoriasis type symptoms. 

I had a rodent ulcer (basal cell carcinoma) removed a few years ago, but I don't know whether that was related.

Over the years I've tried various emollients and creams etc, and seem to have settled on a current regimen that ensures relative comfort and seems to keep things under control.

Twice daily I apply Aveeno cream all over, a pump dispenser bottle lasts around a week to 10 days so prescriptions are helpful costwise (free in Scotland). That is the most effective in terms of comfort, a definite improvement on the Diprobase ointment I used to use.. Additionally, if I bath I will use a cap and a half of Dermol 600 bath emollient (similar to Oilatum and Balneum Plus). Showering is just a case of using mild products for sensitive skin for me - I find the application of Aveeno straight after drying is the most important thing here... 

I occasionally apply a small amount of steroid cream (mometasone furoate) to a particularly red patch of skin flare-up, which tends to reduce after a few days.

Having lived with MF for so long I'd like to reassure anyone new to it that it's only ever been a mild inconvenience to me compared to other cancers I've witnessed. That's not to say it doesn't regularly worry me, especially if I get anything else wrong with me (like my current very painful sore tonsils...). But I just try to be sensible and manage it - I'll only get light treatment again if it escalates considerably. The novelty of a free tan was cool the first time, but with a limited number of lifetime treatments I'll save them for if I really need them in future.

Anyway, I guess I'll be sensible again and go to the GP to check out my tonsils and throat, hopefully it's just that time of year...

Other than that I'll keep applying the moisturizers and hope it doesn't progress - I've been told there's a 90% chance it won't, so I'll take those odds!

Hope that helps anyone new to it, and all the best to fellow sufferers and relatives.

Paul x

So my dad went back to London yesterday to check in how the treatment went , not good news some patches have responded others have got really bad and infected  he is having 2 weeks total skin electronic beam therapy   And will stay up in London as not allowed to travel , they seem to be coming up everywhere now so hopefully this will work , trying to stay positive but hard when someone you love is deteriorating in front of you  hope everyone is well and thank you for letting me unload 

Im glad your father is getting the treatment he needs, although it is not the best of news he has a chance to see if the new therapy works.

Feel free to unload anytime. Most of the people on this thread are in the same boat and can definitely understand what its like... I know I can.

Stay strong for him even though it would seem near impossible sometimes.

I've had this for about 20 years now.  Mine has been kept in Stage 1 and under control by tanning, which basically is a low form of radiation.  I have large areas of it, but if I tan regularly, it will disappear, but it won't be cured.  I was told that as long as I was in stage 1, that I would die with it, but not because of it.  When it was first disagnosed, they didn't tell me that I would never be cured, so when I got rid of it the first time, I thought I was done with it.  I currently am seen at xxx, and I'm now down to where I go every 6 months.  So far so good.  

Hope this gives you some hope.

Cathy

I just sent a message to Mori that I've had this for about 20 years now in Stage 1B.  As long as it's kept in stage 1, your life pretty much goes on as normal.  I was told to start tanning, and it has pretty much kept it under control, but what I wasn't told when I was first diagnosed, was that it can't be cured in stage 1, and that the mortality rate at the other stages was extrememly high.  I didn't find that out until it re-appeared a couple of years ago.  I will be 70 years old this summer, and retired last fall from working full time, so you can live a very normal life with it in stage 1, just keep tanning.

Hope ths help.

Cathy

That is good news Cathy! 

I hope that any newly diagnosed patients read your message, because it is very easy to "freak out" when you are diagnosed with Mycosis Fungoides.

As you say, the reality of stage 1A and 1B is that "life goes on".

However, if you are diagnosed at stage 2B, it's a different  situation, and treatment at a centre of excellence should be a priority.

Regards - Mori

it’s been 3 weeks since my dad finished his light therapy treatment and it’s like he’s a different person, nearly always of his sores have nearly gone and the others shrunk in size and fading , only trouble he has he has a big one on his tongue with doesn’t seem to be responding and is causing a lot of pain and making eating very hard causing weight loss which the hospital want to keep a close eye on , he goes back Monday to discuss next step , our family have been through a lot of stress as just finished a 2.5 year coroners court case over my mothers deaths which couldn’t of gone better as it was ruled as gross neglect and we finally have been able to register her death so it’s closure for us all , and I’m sure the added stress was affecting my dad so now he can relax , I can’t believe how well he responded to treatment and want everyone not to give up hope , my dad was gravely Ill and now seems to be on the mend x

Lauraborg that's fantastic news!

The UV light treatment is brilliant for Stage I A & B, and II A.  I always end up with a rediculous suntan at the end of treatment.

If your dad has to have very frequent UV treatment, it might pay to ask for a referal to a dermatologist to do annual skin cancer checks, for nasties like melanoma (which can often be agressive and need to be caught early.)

I suppose it's difficult to get UV light onto a tounge.  It might be that low level radiation is used as a "spot treatment" - but let's leave that to you dad's specialists to sort out.  There's other medical options too.

I wish you and your family happiness :-)

Regards - Mori

Hi there, 

2 years have passed since you wrote this. My little boy is also thought to have this condition. How is everything going? 

My little boy isnt even 2 years old yet. We are waiting to hear more from health professionals but it feels like nobody really knows much about this condition. 

I feel very alone, would really appreciate a chat with someone who understands. 

Thanks